thread: And then there was 4 - Mateauz journey with Cerabal palsey

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  1. #1

    Dec 2005
    not with crazy people
    8,023

    The Birth

    OMG girls...I didnt expect anyone to have read it already. Thank you for all your support

    The Birth

    My first memory was waking up and begging for my baby and my husband. All I wanted to do was put my son on my breast and bond with him.

    Sorry Mrs Bourke - your son is in special care nursery...he isnt well

    I so didn't need to hear that straight away. I just kept thinking

    OMG my babies going to die...I need to see him..touch him....let him know his mummy loves him.
    Let him know I was sorry for not feeling anything to him cause I was disapointed that he was a boy and not a girl.
    Let him know that I dont care if he has a willy.....I just wanted to hold him.......give him what he needs.

    I was sitting there in recovery...oblivious to the people around me (I had a general) feeling over the moon that my baby was finally born yet scared, angry and yearning all at the same time. Jed said he walked in to see me sitting there with a big cheesie grin and tears just streaming down my face. Little did I know it was the beginning of a long, long road.

    I was taken to a private room. I begged the staff to take the tubes ect out and let me see my son.

    NO you cant...your in no state.

    No state my arse...you take me to my son now I screamed at them.

    I had a pead come in and tell me (surprise surprise) that my 'son' (they could never pronounce his name) was born the his umbilical cord around his neck 3 times and was very blue due to lack of oxygen. He'd also suffered seizures and had to be monitored. they blamed the seizures on his blood levels being low but as you'll read later it wasnt the case. I was in thearter for 2 hours..alot longer then a normal c/s. The pead asked me what my expectations were feeding wise and I told him that I want to BF him NOW which he demanded a nurse take me down. Mind you this was at 6pm...Mateauz was born at 10am. I was wheeled in a wheel chair and all i could do was cry when I first was him. I had the most lovely nurse who helped me sit down and let me hold him. Jed by this time had already gone home to our other children so yet again I felt very alone and affraid. My little man was so frail and small. He had blue hands and feet, along with blue lips.....yet when I held him for that first time, I knew, he knew I was his mummy. I swear I heard a sigh as he nuzzled in to my breast. My little man knew. I didnt even hesitate, I popped him straight on my bb and he feed perfectly. I had another nurse come over and tell me I should be putting him back in his humi crib and I just glared at her. I was not doing anything of the sort. My little guy was feeding and he needed ME!

    Day 1 saw a barage of u/s done on his head (which came back all clear and we later found out was not accurate enough) blood tests..were I cried so much as I watched them ***** his foot and squeeze blood out time and time again. I had an arguement with one of the head midwives who tried to put a tube down his nose to 'feed' him. I told her in ummm a colourful way where to stick the tube as I was BFing my son and that was that. I never left his side, other to sleep, pee or shower. By this stage...mateauz was looking more and more like any other new born. He was soft and fresh with long fingers and full lips like a cherub. He was doing so well that he was placed into a normal cot in SCN. 2 hours later he crashed and was put under lights and oxygen as his stats took a big dive. He had to have more testing done at this time so I took the opportunity to go and have a shower and eat something. It was in the shower that I lost it. I sobbed until my lungs hurt. I hated myself and was blaming myself for what had happened to my little guy - its a normal part of grief I was told by the social worker who visited me later in the week. Thankfully I had a wonderful midwife who was the signs of me cracking and hearing me in the shower and got the social worker for me.

    I walked in the SCN on the thursday morning to find that the night nurse had infact put a tube down my son's nose to feed him, against my will. I went off to say it nicely.....and just as I was the pead walked and went off aswell. He was so angry as I had pushed to BF Mateauz the whole time and they were trying to give him formula. The nurse had tried to say that he wasnt latching on properly and thought the 'child' needed formula. The pead said the tube could stay in for 24 hours just in case but they were to call me when he needed feed. THANK GOD!!!! II remember him say
    if the child isnt feeding correctly why is he now then?? As I BF Mateauz straight away.

    My little fella went from strength to strength. He was put back into a normal cot on the friday and was thriving. I would kidnap him later that afternoon and had him in my room so he could get some sun light as he started to get a major yellow complexion. I just sat there the whole time staring at him...taking in how perfect he looked.

    ON sunday we were given the all clear to go home. The pead was happy as he was 50grams more then his birth weight...he had had no more seizures and was feeding perfectly...yet there was still that nagging in my head. Why were his hands so blue all the time? Why did his face appear blue? yet cause I was in such a hurry to get my little man home were I could nuture him....I ignored it and thought he must be fine.

    And this is were the story REALLY beings...........

  2. #2

    Nov 2008
    Country Victoria
    397

    Oh Maz, I have tears in my eyes and goose bumps, what a journey so far! Yo uare so strong! CAn't wait to hear the rest, am finding it hard to beleive the stupidity of some of these midwives you encountered but if you were in the hossy i think you were then i am not surprised!
    Thanks again for choosing to share with us

  3. #3
    Registered User

    Dec 2006
    In my own private paradise
    15,272

    you're doing a fantastic job of sharing your story Maz

    and i'm sure it's very cathartic to get it all out hun!

  4. #4
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    and and ......

  5. #5
    rhyb Guest

    Well done on telling them where to stick that feeding tube your such a brave mummy Mateauz is very lucky to have you! Will be watching for more Maz very moving!

  6. #6
    Registered User

    Aug 2005
    central coast
    1,481

    thanks for sharing maz

  7. #7
    Registered User

    Jul 2006
    Melbourne
    3,715

    Thanks for sharing with us Maz

  8. #8
    Life Subscriber

    Jul 2006
    Brisbane
    6,683

    Maz, I am so glad you are sharing this, I really hope it helps you to process it all. I'm going to have to stop reading it at work though, I have tears streaming down my face already!

    You are a such a brave woman hun.

  9. #9

    Dec 2005
    not with crazy people
    8,023

    2 weeks grace

    2 weeks grace

    We're home.!!!

    Finally..I could put my darling little man in his bassinet which I placed so lovingly in our bedroom so I could always have him close. He had his own room but I just wasn't comfortable leaving him in there by himself. All the other kids went in their own rooms by day 2 but not with Mateauz. He stayed near me.

    He would often wake at 3 or 4am for a feed so I'd bring him into bed and Id end up going to sleep, on my side with him on my boob. Id be woken again at 7 by my little man latching on and feeding again. I'll never forget those moments.

    Mateauz proved to sleep alot and feed every 3 hours. When he was awake he cried and cired...I just couldnt settle him and put it down to me being over tired.

    We had a health nurses appointment on the wednesday before it all happened. I was really worried that I couldnt see mateauz soft spot anymore adn that he looked puffy....

    ah nothing to worry about...his fontenal is there...i can feel it

    hmmmm that doubt knot was back in my tummy...its just wasnt right. She also tried to get me to top up with formula as he was under 3 kg still although he was putting on 90grams a week....it wasnt enough...you can imagine what I told her about her formula cant you

    Sammi came up with Trev on the friday and spent a few hours with us. I was worried casue mateauz seemed very blue still...I was forever putting warm clothes on him and Sammi noticed how blue he was aswell. And the crying...it use to break my heart (I still cant bare him crying)

    Sunday afternoon I went over to our neighbour who is 80+ to introduce him to her...he wasnt happy and I had that funny feelign again so said I have to go.

    I tried feeding him at 9 that night and he was really funny....turning his head and crying again. At midnight I got up and at 2 I said to Jed I need a break...he just wont feed and he keeps turning his head. I made Jed watch and mateauz left arm and leg twitched when his head rolled to the left.

    I was so over tired so he'd said get 1/2 sleep and we'll see if he gets better. 5 mins later jed was in flinging the phone at me to ring the emergency department.

    I explained to them what was giong on and she said he was suffering seizures...strokes and that an ambulance was on its was......

    Those 10 mins waiting for the ambo's were one of the most slowest of my life....even slower were the 5 mins to the hospital were mateauz seizuered all the way there. These ones were worse...it was like watching a movie were they use a plastic doll as the 'baby' and do silly stuff with it. He was my little guy....almost lifeless, blue and fitting.

    You'll have to wait for my next post.....speak of the devil...he's awake

  10. #10
    rhyb Guest

    Awww poor Mateauz cant wait for the rest of this!

  11. #11
    Registered User
    Add aussienic on Facebook

    Feb 2005
    Boyne Island
    6,327

    i have watched my son turn blue and sieze before (ds2 ages newborn & 7 weeks) not nice..

    Thanks again for sharing

  12. #12
    Registered User

    Jul 2007
    melb
    8,498

    ohh hun im crying reading this. And cuddling Jacob close while he feeds!

    You are a strong amazing woman for sharing this.

  13. #13
    Registered User
    Add ~clover~ on Facebook

    Sep 2007
    travelling
    9,557

    Wow Maz.
    I can't wait to read more, but its so scary to hear what you went through.
    You are amazing.

  14. #14
    Registered User

    May 2008
    Fraser Coast, Qld
    336

    Thank you for sharing Maz. I have smiled through tears reading your story, such love and strength!

  15. #15
    Registered User

    Nov 2007
    Murray Bridge, SA
    1,600

    I'm not a terribly emotional person, but as soon as you were talking about missing your other kids while in hossy with Mat - I began to cry and I'm still bawling like a goose!

    I suddenly feel very VERY blessed to have never had that scary 'will my son live' moment. In comparison, I barely had a ripple in the road compared to your rollercoaster. Thank you for putting life in perspective.

    I hope you'll share this story with the Breastfeeding association as it is so well written they may like to put it in their magazine so you can inspire even more mothers and nursing staff.

    Words can't describe the awe I feel for your journey and how determined you've been. Not even to do the best for your kids, but to do this post.

    We thank you Maz.

  16. #16

    Dec 2005
    not with crazy people
    8,023

    ONE YEAR AGO

    I sat in my brothers car feeling overtired, numb and like I was in a tv commerical. My brother was trying to be chatty (as he does when he's nervous) and I was a silent cold fish. All I could do was look out the window, staring into the sky behind us to see if I would see a glimps of the airplane that was taking my baby boy to the Mercy.

    So much had happened the in the last 12 hours. I remember sitting in the gutter out the front of the emergency department, ringing Sam and baaling my eyes out. Dont ask me what i said...I just remember how calming her voice was and how it felt like a warm light compared to the cold I was feeling.

    Yes...today one year ago our lives changed for ever. My beautiful baby boy was about to go through the most horendous time of his life and I couldnt stop the landslide coming.

    The friday before hand Sammi and Trev (along with Caleb) came up to our place. Sammi took the most beautiful photo's of my little man....I never realised how much those pics would mean to me until after the dust had settled. I look at those pics and wondered how much pain he was suffering on that day. He was crying so much and I kept saying to Sammi...look at how blue he looks....Im pretty sure that you can see how blue he was in some of the pics. I also worry that I made him upset when taking the pics. But there's only so much cotton wool in the world isnt there.

    So this morning I was in the lounge and in bounds my little red head...He didnt see me at first...I just whispered his name...Mateauz...and he instantly turned around and ran for me with his arms out and his big cheese eating grin on his devine face.

    Today's the day I will reflect on the last year.....I'll thank who ever I can in my mind for the comfort, the support and love that we had over the last 12 months.

    Thank my hubby for being not only a pain in the butt but for being my strength and tower of support.

    Thank my gorgeous Nikolaus who has not only had to deal with an autistic brother but now a baby with so many different needs that he puts his own aside and helps when he can. Thank him for putting up with a maniac mother who flips at the worst times and yet he still says nothing. Thank him for his love and his midnight cuddles and thank him for being so patient to us all.

    Thank my devilish Wilhem who loves his 'little guy' to pieces and tried his best to be patient with him. Thank him for being as beautiful in nature as his daddy is and for reminding his big brother what a pain he can be.

    Thank my darling little Vyolett who chases 'teauz' and gets what he wants...showers him with kisses and comes and gives her 'mama' a cuddle when she is crying. Thank her for being a mini me..in so many ways and for making my life interesting on so many levels.

    And thank you to my little Mateauz. My little miracle...you were the only baby we didnt intentional 'plan' you were our surprise baby who has bought so many positives into our home and hearts. Yourve taught me to be patient...to see things on the flip side.....to see the bigger picture....to strive for the impossible..to believe in myself. Although your only a year old...you have given me so much more then you have realised.

    I live for your smile, your hugs,the sound of your voice......the feel of you. If I had to relive the last 18 months, as hard, as scarey and as life threatening as they were, I wouldn't change a thing.

    I love you sunshine boy.......more then words can say.

  17. #17
    Registered User

    Jun 2008
    Melbourne
    45

    Oh hun, you've come such long way on this journey. You've grown stronger and so has the rest of the family. He is a miracle in more ways than one and hes so lucky to have so much love around him..
    Enjoy today and reflect on the good times xoxoxoxox

  18. #18
    Registered User

    Nov 2007
    Murray Bridge, SA
    1,600

    Maz - you're a truly talented writer.

    Thank you ever so much for sharing your story. I am so glad you found it within yourself to do this. You are very courageous.